All Posts Tagged ‘dysautonomia


Living Incurably on a budget, Part II

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I’m rather proud of my money-saving prowess when it comes to stationary.  In a boutique or gift shop, these small packs of stationary could cost you $8.00 or more.  But I keep my desk drawer stocked with these lovely cards which cost me $1.00/pack (8 cards in a pack).  I found all of them in the Dollar Bins at both Michael’s and Target.  So at $1.00/pack, with the competitor prices at $8.00/pack I figure I saved myself $28 on the stationary below.


Unfortunately, as many of you probably are probably familiar with, most of the time there isn’t actually $28 to shopping with.  There’s $28 which is already allotted to pay for something really boring, like car insurance.  But the bargain satisfies, none the less.  xoxo


Why the horrendously unrealistic “Red Band Society” can be a good thing

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Disclosure:  I haven’t seen the show I’m writing about, “The Red Band Society” a drama on Fox about chronically ill teenagers who apparently live the life of…not chronically ill teenagers.  I’m skipping right over that seemingly important part because what has interested me is the reaction it is causing.  This September 12th piece entitled, “Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all” in The Washington Post written by Yale University student Lillie Lainoff is an impressive opinion piece that illustrates the many ways the show is absurdly unrealistic.  Ms. Lainoff has been dealing with the autonomic nervous system disorder POTS since her very early teen years and, understandably, is insulted by how the show makes chronic illness seem like a glamorous experience.  She writes:

“Red Band Society” is being lauded as a departure from the idealization of teen chronic illness and death in recent young-adult books and movies such as “The Fault in Our Stars” and “If I Stay.” Merrill Barr writes in Forbes that “what audiences will immediately take notice of in Red Band Society is its willingness to not sugarcoat the reality of the patients’ various situations.” But based on the pilot, nothing in how the patients are portrayed is realistic. The viewer never sees a character taking medication, going through a treatment or doing anything that a typical patient does in a hospital.

The New Yorker reviewed the show in its September 15th issue and didn’t have anything kind to say about it either.   Along with pointing out some of the most painful lines of the first episode, (“Everyone thinks that when you go to the hospital life stops.  But it’s just the opposite: life starts,”) the review shares the view of Ms. Lainoff that it was a “commercial gambit” designed to play off recent and very popular young adult fiction and the resulting movies:

The show mines a primal adolescent fantasy: that sickness might be a form of glamour, making a person special and deeper than other humans.

While it sounds like the writers of the show have never had an illness lasting more than 5 days and were most inspired by marketing projections, I can be at peace with that.  First because Hollywood glamorizes everything.  Hell, if they can glamorize prostitution in Pretty Woman (how many women have told themselves that Julia Robert’s week with Richard Gere didn’t count as whoring because they ended up as a legitimate couple together in the end?), of course they can figure out how to glamorize chronically ill teenagers.  Second, would pieces like Ms. Lainoff’s – a young person sharing their experience of chronic illness – have gained so much attention without the insipid “Red Band Society”?  Discussion is occurring about chronic illness from college dorm rooms to national newspapers and magazines.  That’s a good thing.


Living Incurably on a budget, Part I

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Yesterday I took a cupcake decorating class at JoAnn Fabrics.  It cost $10 and was an hour long which I think is the perfect length of time for someone who wants to get out of the house but doesn’t have the stamina for long outings.  (And it’s also a pretty decent price for someone who isn’t able to work full-time.)  You bring your own cupcakes and share the classroom with a small group and it’s really quite pleasant to visit while you decorate.  I checked with Google Maps and there are JoAnn Fabrics all over the U.S., and possibly non-chain options in your area as well.  I hope some of you get to try it and enjoy it as much as I did.  It’s surprisingly easier to do than I expected.  Here’s 2 of my creations.


Scarves and crying wolf about our illnesses


I’ve taken to wearing scarves on the back half of my head, wrapped around my neck.  Strangers have complimented me but I expect after a couple more times family and friends are going to get inquisitive.  Scarves and bold fashion aren’t too common in the great state of New Hampshire, and they’ll probably be worried that I joined some kind of New Age religion over the internet without telling them.

Now I’m one to prepare a defense beforehand and I hate to admit it, but I have considered crying wolf about my illness.  “It hurts my arms so much to blow dry my hair,” I could say helplessly.  Which is true.  It does hurt my arms to blow dry, and even shampoo my hair.  But that’s maybe 1/6 of the reason I’m covering my head and to claim illness as the sole cause would in fact be crying wolf.  See this article about “The Boy Who Cried Wolf” if you’re under 22 years old and therefore unfamiliar with this fable.  Kids these days.

Crying wolf about our illness is easy to do even unconsciously, and let’s all admit that we’ve done it at least once.  Housework, schoolwork, jobs, social events, and errands could be a few circumstances where we excuse ourselves by exaggerating, just a little, that our illness is the main reason we’re gonna cut and run.  Chronic illness so througohly permeates all aspects of our lives that it is almost always there lurking during decision-making time.  However, claiming it as the main reason when it isn’t makes you the little boy and your illness the wolf.  And we all know why that’s a bad thing – after a while people start to distrust you and then when you really need them to believe you – well, you get eaten by a wolf.

In addition to losing the trust of people, I also believe you can lose a little of your personality as well.  We’re still people with dislikes, laziness, and preferences.  Maybe you hate the fact that your in-laws only serve olives at their get togethers.  Or you need a day off from studying for the SATs.  Or you just really want to take a personal day to go shopping.  These were aspects of you before the illness, so speak the truth now, and help preserve the greater body of your personality.

So my non-wolf reasons for this phase of head scarves?

  1. I think scarves are pretty and I feel pretty in them.
  2. I like doing something different here in little NH.
  3. I have a peculiar little theory that I get to keep more of me the days I wear a head scarf.  Like my strengths are more safely contained inside, as opposed to evaporating away.  I suspect the psychological base of this theory is that when my head is uncovered I spend a ridiculous amount of time looking in reflective surfaces and/or worrying about how my hair looks, and wearing a scarf is training me to not look as often, which frees up time in my head to think about more creative pursuits as well as being more engaged with my interactions with people.
  4. It does hurt to blow dry my hair and the scarf helps to mitigate some of that.

Here’s me as well as a fashionable lady pictures found over at and, as well as the 3 new scarves I just splurged on at Old Navy where, at 40% off this week, each scarf was about $8.


Wellbutrin and the value of having a diverse medical team

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If I wasn’t a substitute teacher and the daughter of a ladylike lady, I would be tempted to write a very candid post about a certain medicine that can counter the unwanted side effects of many anxiety/antidepressant medicines.  I wouldn’t name these “unwanted side effects” because they relate to the boudoir.  And that would be shockingly unladylike.  But many of us know that if even if you have chronic pain, there is one place on your body you would like to feel things.  Boudoir things.  And suprisingly, this unnamed prescription, which is typically used to treat anxiety/depression/nicotine withdrawal, can act as a counterweight and actually get some feeling back to these boudoir areas of the body.

I risk sounding unladylike because of my greater point:  my Primary Care Physician didn’t tell me about this nifty little trick.  None of my specialist MDs told me about this.  My counselor, who does not even prescribe prescriptions, but who is excellent at taking all the crap that people vent to her about and finding solutions, gave me this handy information.  The greater lesson of my anecdote is that sometimes the professionals who actually spend a considerable amount of time with their patients, even if they have less legal authority in the field of medicine, are incredibly valuable. 

And dare I risk sounding unladylike again, but I’ll tell you this:  My fiancé owes my counselor a thank you note.  Her tip worked.  (For me, at least.)

Note: This is NOT medical advice.  I am NOT recommending that anyone take a new medication.  I am making a point about the value of having a diverse medical team.


Off-Label Prescriptions

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Paul Gileno, of the U.S. Pain Foundation, published this letter in my local Concord Monitor.  He discuses a new state law that will go into effect this month that prevents insurance companies from mandating a patient try other (read cheaper) prescription drugs (ones that are not listed by the FDA as treatment for your condition) before they will pay for the medicine that you and your doctor know you actually need.  Interestingly, it also prevents insurance companies from refusing to cover a prescription that is also not listed by the FDA as a treatment for your condition, but that you and your doctor know is best for you.  Sounds like NH legislators did a thorough job with their research.  Well done.

(On the lighter side of the off-label issue, remember the episode of House, MD where House is called before a furious Medicare judge who wants to know why he prescribed Viagra to a 70 year old woman?  His answer was that it lowers her blood pressure.  And apparently he wasn’t wrong – Harvard agrees.)

Letter: New law protects patients

Prescribing medicines requires extensive medical training, clinical experience and direct knowledge of a patient’s personal medical history, all of which is best understood by a patient’s own health care provider.

But that doesn’t stop insurers from trying to interfere. I should know. I’ve been battling health insurers almost as long as I’ve been battling pain – nearly 12 years.

Yet, insurers still find ways to astonish me with schemes that put dollars over patient health. Luckily for residents of New Hampshire, a new law goes into effect this month (SB 91) that will help protect patients from an especially egregious cost-containment practice: forced off-label prescribing.

Forced off-label prescribing occurs when insurers require that patients try and fail on one or more prescription medicines that are not approved by the Food and Drug Administration for the treatment of their medical condition before granting access to those that are. Insurers require this extra step not because the off-label treatment is better, but because it is cheaper.

New Hampshire’s new law protects patients living with pain and other medical conditions by putting restrictions around this practice.

Of course, off-label medicines are often the best option for patients. Just ask anyone living with cancer or an autoimmune disorder.

The new law also limits insurers’ ability to refuse coverage for off-label use when prescribed by a health care provider. The bottom line is this: Providers must have the discretion to prescribe the medicines that are best for their patients, not an insurer’s balance sheet.


Middletown, Conn.

(The writer is CEO of the U.S. Pain Foundation in Connecticut.)


Living Incurably Calls for Inspiration

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In my effort to be the best little blogger/writer I can be, I’m discovering how important inspiration is.  Not in the sense that I’m finely skilled painter who sees an idyllic chapel on a rolling hillside and says, “I MUST paint this!” but in the sense that little things here and there give me ideas for posts and essays, or at the very least, encourage me to keep at it.

On this fine Friday, here’s a few things that inspire me…

Other people pursuing their goals/interests. My fiancé does freelance writing for a NH history magazine, called Rediscover New Hampshire. I’ve even mentioned in this particular article, which I find very romantic.


Getting the heck out of town sometimes.  Especially when wearing my favorite wardrobe choices.  This summer Christopher and I visited Stowe, VT and what a great town.  On a whim we stopped at the West Branch Gallery and Sculpture Garden. I really liked it there.  I also really liked my outfit that day.


My living environment.  I find sharing a house with Christopher is often inspirational because besides his writing, he creates these amazing art projects seemingly out of nowhere, masters them, and then moves on to something else.  Here’s a product of the summer he took up spray paint art


and here’s a plain wooden chair that he made a whole lot more interesting.  There’s a matching coffee table as well.


What inspires you to pursue your interests?  Or even just to get out of bed in the morning?  When you’re chronically ill sometimes that’s the crucial first step.


Living Incurably…amongst the Wild Ginseng


Seeing’s how it’s physical labor, this is probably NOT a helpful part-time job posting for anyone who is chronically ill.  But just in case you were sitting on cases and cases of Wild Ginseng, here it is.  At $900/pound, I’ll take a 10% finders fee.  What?  I don’t have any extra money.  Or extra Ginseng, for that matter.



Equivalency of an open liquor cabinet


My counselor told me leaving prescription drugs (of any kind, not just pain killers) accessible to others is like leaving a hard liquor cabinet unlocked around kids or leaving an open bottle of wine around a recovering alcholic.  She said no matter how much you trust your kids and your guests, it is the responsible thing to keep your prescription bottles in a lockbox. She told me this over a year ago and finally a few months ago I made the change from keeping my medicine on a high kitchen shelf to locking it up safe in a lockbox.  Despite my wonderful family and their friends, I was surprised at how reassured I felt; I think my subconscious was trying to mentally keep track of how many pills I had of each variety to make sure none were missing. I highly recommend making the change if you haven’t already.

Here’s the box I purchased:

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And here’s the pill boxes I use so I only have to access the lockbox once a week:



A kind book review from a mental health provider

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A warm review by a mental health provider came in today for my little book:

“Since laughing is (of course) therapeutic, folks with chronic illness would benefit from reading your gem.  They’d also get the bonus of very helpful tips, not to mention your compassion.”

-Ann Freese, LCMHC

This is wonderful encouragement as I try to hone my writing through blogging, essay writing, and a someday 2nd edition of the book (in paper and including my colorful graphically-designed thoughts!)  It’s a journey that much to my own frustration, is often interrupted by my own chronic illness.  But the benefits far outweigh the costs, as writing enables me to endure the mental battles that accompany physical illness.  Especially when someone thinks the writing is funny.  Now that is a great feeling. 



Two Product Tips


I always have a pack of Salonpas Large Size (5″x3″) patches in my handbag.  One patch covers up the site of my worst shoulder muscle spasms.  It does kind of feel like it’s chemically burning your skin,  but if you have muscle spasms like mine, you welcome the distraction.  Some days it even relaxes the muscle enough that hours later when I peel it off, the spasm is almost gone.  I get them at Rite Aid, a pack of 4 patches costs $2.99.  


As I’ve mentioned before, I am a big fan of prunes and a certain prune/plum juice to combat the common constipation problem that comes with chronic illness and medication side effects, but I thought it was worth mentioning for those of you that prefer Miralax that a doctor wrote me a prescription for it this summer, and I got a giant bottle for way less than the cost of a tiny bottle of OTC Miralax.  I checked to make sure it really was the same thing, and as you can see below, the generic Rx seems to have exactly the same formula.  



I hope this information is helpful to someone out there!


God Bless Mediocre Television

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I’m not very good at getting rest when I’m home alone.  Chris was home sick for a couple days this summer, and I was lounging about with him, taking naps, reading, watching tv.  Yet when I’m at home and he’s at work I can’t settle.  Which isn’t some kind of hard-working virtue of mine, it’s just unwise and stupid.  Because if I spend any length of time cleaning or working on little projects, the muscle spasms and the dizziness kick in and then I’m laid up and miserable and totally useless for another day and half.  But I just can’t seem to learn.  I’ll stagger around with blurred vision all tachycardic like my life depends on putting the dishes away.

So  my new strategy involves mediocre television.  Say I want to sweep my downstairs floors. Instead of push, push, pushing through it until I’m forced to  lay down on my not-yet-clean floor, I’ve been queuing up Nextflix and playing a mediocre tv show in the living room.  With a mediocre show, I’m happy to listen to it in either room and occasionally sit down on the couch to watch.  Bingo.  That’s me, taking it easier while I clean.


Disability accommodations in school settings

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Great article on “Requesting Disability Accommodations” in school settings here. The author Julie, over at Counting My Spoons blog, reminds us that accommodations doesn’t just mean a stereotypical wheelchair; one of her accommodations is that she can wear sunglasses in class, another that she be able to type long exams instead of handwrite them.  And remember this isn’t just for colleges – if you’re the parent of an ill child, don’t be afraid to insist (well, ask nicely first) on creative accommodations that would help even the playing field for your child.

Sometimes I meantally start a list of the accommodations my childhood self needed, but the minute I start thinking about it, I feel my pain getting worse from the stress of the memories.  There’s no point in going there, none whatsoever.  For my physical and mental health, I have to let go of that crap, live for now, and look forward to the future.  Which, by the way, is way more fun.


Escaping reality, being broke and going to the library


If you are interested in something that draws you so far into its reality that you nearly forget about your own reality (sounds pretty good doesn’t it?), then get your hands on the books of The Southern Beach Trilogy by Jeff Vandermeer.


I sped through the first book, Annihilation, and last night finished the second, Authority. I’m now waiting for someone to return the third book to my local public library.  Love that place.

I toyed with the idea of including a chapter in my little book entitled, “Go to the Library.”  If I ever were to include this in some newly revised edition of the book, here are my reasons I think everyone – but especially the chronically ill – should go to the library:

  1. It’s free. I would hate to make assumptions about your personal life, but I feel pretty comfortable asserting that if you are chronically ill like me, there’s a darn good chance you’re broke like me.
  2. Reading is a blessed distraction. From pain, from the fact that yet again you’re sitting in a waiting room, from the fact that you’re broke (see #1 above).
  3. This one is less a reason and more of an observation: Doctors love to see their patients reading.  I’m telling you, doctors will walk into the exam room, see that you’re reading, and all of a sudden they find you intelligent, interesting, and worthy of respect.
  4. It’s a great way to rest your body when your mind does not really feel like resting.
  5. With the right person, it can be quite fun to chat about the plots of the books you’re currently reading. Especially helpful on dates.
  6. As well as books your library probably also offers: Free Wi-Fi and use of computers, audio books, large print books, magazines, newspapers and DVDs of both films and television shows.  Because sometimes, even a Redbox rental isn’t in the budget.

A free public library card, however, is always in the budget.


Worse than an inconvenience but less than an outright emergency

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Along with major emergencies, chronic illness gives us many days with situations that are worse than an inconvenience but less than an outright emergency…such as having to rush home from work because of violent GI problems or having an appointment that involves  things more invasive than just looking down your throat with a tongue depressor. Despite the fact that these instances can be extremely frequent, they’re never quite feel commonplace.

The years I spent getting acclimated to being chronically ill – and by that I mean, like, the first 8 years – I felt as if nothing else can could get done on these days, nothing could be enjoyed; it was declared a disaster, and a total loss.

I look back now and realize that a lot of that was emotional. I felt guilty for going home from work early, I felt embarrassed I couldn’t stay for the whole baby shower, I felt angry and despondent that part of my day was interrupted by something inconvenienced or unpleasant. So I plunked down on the couch and lived the Sick Girl part well all day and night.

Sometimes we are really so sick that the day is a wash – which in that case – staying in bed all day is totally the best and only course of action!  But with my illness, there are often days that feel like an emergency room disaster and then gradually improve to a kind of icky/painful stay at home day instead.  And the difference between me now and me in the beginning of my illness, is that on those days, I’m able to move on emotionally and mentally. Which is much more enjoyable and productive.

Some examples.  Just because I had to cancel lunch because I’m on muscle relaxers and can’t drive doesn’t mean I can’t clean out my sock drawer or write a bunch of thank you notes.  (Although I wouldn’t mess with too many big words, because as my first rheumatologist used to say, “The only muscle these things actually relax is the one between your ears!”)  Or just because you had to come home from work due to that violent bout of violent diarrhea doesn’t mean there’s anything wrong with later in the day catching up on your house cleaning. (It would be bad form to hit the mall though, you just know you’d run into a coworker there!)

I think we often call a day a wash when it isn’t because we’re a little traumatized by the minor emergency (some things you just never get use to), we feel guilty that we had to cancel working/parenting/whatever the original plan was, OR we feel we must play the role of a proper Sick Person so that others know we really are sick. This last reason is especially relevant if people close to you don’t understand your illness or are still in denial that you need special accommodations.  That just sucks, I’m sorry if that’s your situation.

But once the people around us have caught up with reality, (or you’ve just moved your reality away from them!), it’s really quite something to be able to move on from a hellish midday and actually have a slightly productive or slightly fun evening at home. (Again, hat’s only if you’re physically up to it, of course.)  It’s emotionally healthy because it stops the illness from controlling your whole day, and often it’s physically healthy as well because if you sleep ALL day, your sleep patterns could get all thrown off.

My mother was talking to a friend on the phone, asking about a surgery the friend recently had because of the breast cancer she’s fighting. The friend’s surgery story ended with something like, “…and I didn’t have to stay overnight, so I left the hospital and stopped at the Armenian Market on the way home.”  I thought that was so great, and a perfect example of not letting the disease own every minute of your day.


Let’s Feel Better…while working from home. A re-post.

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Some time ago I wrote two posts as part of my “Running List of Extremely Part-Time Jobs” here and here.  On that same theme, I’d like to direct you over to the clever blog “Let’s Feel Better: Dragging Dysautonomia Through My Twenties one Bitchy, Blunt and Belligerent Blog Post at a Time.”  (Love that title, cracks me up every time.)  Yesterday Blogger Illana posted a great article named, “Working From Home: Jobs You Didn’t Even Think Of!”  It was solution-focused, which I love.  Not that one solution works for everyone of course, but I like the atmosphere of brainstorming solutions.  Well done.




About a catalog & what you’ll get if I win the lottery


My landlord received a catalog in the mail the other day which caught my eye because it was from a company named Solumbra who specializes in clothes for people who need to hide from the sun – alert the Lupus community, right?


Well, after paging through it, I would say alert the wealthy members of the Lupus community.


This very lovely lady’s outfit comes to $362.80  Contrary to what you believe, that does NOT include her shoes OR even one hour of labor for the team of landscaping guys who keeps the path to her bungalow looking so neat but at the same time so luscious.  Nope, just the outfit.  Which, if you’re like me, you’d spill things on within the first week of owning it.

So, no, I will not be spending 2.5 car payments on this outfit.  But I’ll tell you what – if I win the lottery – I mean really big – I’ll track down that landscaping team and send them to y’alls houses for one week each.  Because whether you’re photosensitive or not, WE all know that landscaping probably doesn’t even appear on our list of priorities and even if it does those big-ass rocks that make up the path to her bungalow aren’t getting moved by any of US.  I put the catalog back in my landlord’s mail basket.





Getting wild in the prune juice aisle


In my little book I talk about how how I’m all for prunes to solve the constipation that often comes with chronic illness or is medication induced. Prunes are all natural and MUCH less expensive than some of the OTC pharmacy aisle remedies (yes Miralax, I am talking about you!)

Lately I’ve been gettin’ wild and going with prune juice instead of whole prunes. But gettin’ wild often comes with a price and last week I bought the wrong prune juice and it tasted AWFUL . Like, so bad I threw it out. And I’m really cheap, so that’s saying something.

So if you feel like getting’ wild in the prune juice aisle, I want you to  know, that in my humble opinion….

The yucky stuff looks like this:


The yummy stuff looks like this:



Fun fact: prunes are dried plums. Hope this is helpful! (the whole post I mean, not just the fun fact)


Avoiding the pain inflicted by bras, Part II


Yesterday’s outfit and post were centered around the wish to avoid the pain caused by bras for people with chronic illnesses involving muscle soreness, muscle spasms, extra nerve sensitivity, etc.

Today I must share with you a video that was sent to me last night by my friend Liz.  The lady in the video demonstrates how to take a large scarf and turn it into a drapey shrug/vest that perfectly conceals any evidence of…well, as I mentioned yesterday, it starts with an “n” and rhymes with “ripples.” Here’s the video:

After watching the video, I immediately went to my scarf drawer and picked out a couple that I really like but never wear as scarves and with some adjusting here and there – I had three new tops! I’m still amazed when little “fashion hacks” actually work.  Here’s some pics of my results.

IMG_4386   IMG_1770 IMG_0979   IMG_7724IMG_5127

I did the first two just like the video showed.  This last one is made out of a thick knit so the knot ended up being enormous.  I’m currently working on replacing the knot with some safety pin and/or a few sewn stitches.






My ongoing quest to avoid the pain inflicted by bras…but still look ladylike


Those of you who have a chronic illness involving muscle pain and/or extra sensitivity know that straps are problematic. Bra straps, purse straps, halter top straps, and God forbid – backpack straps. I will go out of my way to avoid all these. Hence my rolly (that’s not a word but it’s maybe it should be?) backpack.

When I must wear a bra (somedays considered a torture contraption), I’m very picky about the style. When I find one that works, I buy it in every color. Wal-Mart had a great $5.00 bra I wanted to give y’all a link to, but apparently they no longer sell it. Sad face.

But most of the time I avoid wearing a bra. BUT my mama brought me up to be a lady so those days I have to put some effort into hiding…you know…the word that starts with an “n” and rhymes with “ripples.” Here’s today’s outfit. This is a $10 dress from Ocean State Job Lot, made out of an incredibly soft material, and this $6 drapey vest from Burlington Coat Factory provides just enough of another layer of fabric to be decent. I stayed cool, avoided muscle spasms and wasn’t embarrassed when my dad and niece stopped by for a visit.



Hope this is a helpful post for someone out there whose in the same pain boat as I am.





This week is a No Cleaning Week, but if it weren’t…

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Last week I wrote about How I “clean” the bathroom when I’m not feeling well enough to actually CLEAN the bathroom.

Well, this is a week where I’m not doing ANY cleaning. A couple slightly busy days in a row have exacerbated GI problems, weakness and dizziness. So housekeeping is a low priority and I don’t feel bad about it at all. (She wrote with a wry smile.)

But I did want to post about how I “clean” the kitchen during those in-between weeks where I’m up for a little cleaning. Or rather, a few tactics that make it look like I did some cleaning.

  • Empty the sink and dish dryer of ALL dishes
  • Clean everything off the counters besides those appliances which live there
  • Take everything old or non-essential off the fridge (for some reason, that makes a huge visual difference)
  • maybe sweep the floor (less arduous than vaccuuming)
  • get someone who’s strong to take out the garbage
  • if need be, spray some Glade “Fresh Linen” air freshner



Written by AshleyJane Kneeland, who can be reached at


Lupus Photosensitivity as a barrier to driving mobility

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Dear Ford Mobility Motoring Program,

I recently leased a 2014 Focus SE from Grappone Ford, here in Concord, NH.  It was a very pleasant shopping experience and I am very much enjoying my new Focus and its affordable price.

Upon learning about your Motoring Mobility Reimbursement Program, I wanted to appeal to you to cover my medically necessary tinted windows.  I am a Systemic Lupus patient.  Systemic Lupus is an autoimmune illness where the body’s own immune system attacks healthy tissue such as the nervous system, the kidneys, skin, etc.

Unfortunately, it is an incurable illness which can be fatal if preventative measures are not taken.  One of the many manifestations of the disease is called “photosensitivity.” This is where exposure to bright sunlight    causes flares of painful and potentially dangerous symptoms of the disease.

Even with all the protective measures I take when I go out during the day, I feel the effects of the sun while driving to doctors’ appointments (an hour drive), to my part-time job (20 min drive) and even the grocery store (just a 5 min drive).  If your program was able to reimburse me for my medically required tinted windows, it would effectively be giving me greater freedom and preventing symptoms such as debilitating pain and fatigue, rashes and worse.  I would be happy to provide a doctors’ note and any other information you may require.

I am appealing to you as a Lupus patient and as a health advocacy writer/blogger to recognize Lupus photosensitivity as a barrier to mobility.

Thank you for your consideration.

(By AshleyJane Kneeland, who can be reached at



Chronic Illness #Stigma

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Here are some of the highlights of the HealthCentral Anti-Stigma Tweet Chat I participated in yesterday (my first ever tweet chat!) They’re in no particular order, as I took screen shots of some of my tweets and my favorite tweets of others.  To read all the tweets, search for #HealthTipsChat on Twitter.

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Lesson at PetSmart


Props to PetSmart today. When I walked in I (hesitatingly because I’ve never done this before) asked if there was anyone who could help me with the heavy kitty litter? All I said was that I had a muscle condition and it was hard for me to do myself.  I figured they’d just lift it into a cart for me. But the young guy who helped me carried the bag (42lbs) to the cashier, waited while I paid, and then carried it out to my car.

So now it’s 5 hours later and I’m not in horrendous pain from muscle spasms – thank you PetSmart!

Lesson: Don’t be afraid to ask nicely for help – and a short vague explanation suffices just fine. (I’m sure they did not want to hear all about my health condition any more than I wanted to share it.)


This is the kitty I was shopping for – I’d do most anything for him, but why pay for an incapiciatating muscle spasm if you don’t have to, right?

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Add to my list of chronic illness “How do I….?” questions


The Lupus Foundation, in all its wisdom, has a great page on its website entitled, “How do I explain Lupus to others?” Now this is something I really appreciate. It’s gives practical advice to a question many of us have fussed over in our heads. Figuring out what to say to common questions ahead of time allows you to say nothing more, nothing less than you’d like. In my little book, I call them “Talking Points” because that’s what the Press Secretaries called them when I worked on Capitol Hill.  As in, “Get me a copy of the Senator’s talking points on Afghanistan!”

Here’s some particularly troublesome questions I’ve been unprepared for over the years:

  • How do I tell my boss I can’t come in today because I have 12 Lupus lesions on my lady parts – and NO they are not from an STD!
  • How do I extricate myself from a conversation with a person denouncing “people who are on Disability but still manage to have hobbies”?
  • How do I tell my partner, without being mean and martyred, that unlike him I do not announce all the pain I feel, and contrary to him, I actually get quieter as the pain gets worse? (Love you babe!)

Now, I want to hear your troublesome questions. I’m sure everyone has some really interesting/funny ones unique to their own chronic illness experiences. Join me and reply in the comment boxes below!